Is This Mic On? Testing…123…Testing…

What we say to each other matters. Most of us know that but often speak before thinking. I know I have and will; I am human and make mistakes. I try to ensure my language is helpful, supportive, and sassy. I have learned that disclosing your cancer diagnosis invites people to share unsolicited thoughts, cancer stories, medical advice, opinions on your lifestyle, and so much more. It is Russian roulette; sometimes, their words can be hurtful, catch you off guard, or be exactly what you need to hear. Over the years, I have learned whom to share my diagnosis with and who not to share with.

Cancer is complex, and navigating the social impact of disclosing the diagnosis caught me off-guard. I have learned not to expect people to react the way I would. Words hold the power to narrate our journeys, and I prefer to tell my own.

I have cancer; I am not a cancer patient. There is a clear difference; I come first and cancer is part of me but doesn’t define who I am. This wasn’t always the case. When I was first diagnosed 14 years ago, I identified as a cancer patient. My diagnosis was new. I was learning about it and how to manage it; my cancer was first. Now, 14 years later, I come first and use people’s first language. This is how I identify; each person identifies differently, and it’s a good conversation to have with someone before making any assumptions. Take the person’s lead, respect their language and their choice. Cancer is hard enough, and talking about it takes emotional energy that is hard to explain. Following someone’s lead ensures everyone feels supported, which is the best outcome.

I haven’t always been or felt supported. I have heard a lot of hurtful things during my cancer journey. Everything from being called “lazy” to “you just need to change your diet.” There is one particular comment/story that sticks with me. I was out in the community, and a coworker saw me. My typical disguise of a hat and sunglasses hadn’t been enough. She approached me and started chatting, asking where I had been. I shared that I had been diagnosed with cancer and had taken some time off from work. That was my first mistake: disclosing. Her response was, “You aren’t praying hard enough.” In my head, I started screaming; I was in shock and didn’t know how to respond, so I excused myself by saying I had to finish my shopping. I couldn’t finish shopping. I was too upset. I left the store in tears and went home, leaving my shopping cart in the store. I was crushed and felt so unsupported. I also felt blamed. My response now would be different. It would go something like this: “You have got to be shitting me. Well, thank you for clarifying that (note VERY heavy sarcasm). God has chosen me amongst billions of people to strike down with cancer because I wasn’t praying hard enough?! Hmmm….Sounds suspicious and is one hell of a hurtful thing to say.” Words can hold power, and what we do with them impacts others. I pray she doesn’t say that to others when they share awful news…

Having cancer often means at some point, you will be called brave. The definition of bravery is being ready to face danger and/or pain without fear and with courage. Some might say I wasn’t courageous in leaving my shopping cart behind and going home in tears. Others may argue I was brave because I disclosed my cancer diagnosis, not knowing what my coworker’s reaction would be. Honestly, I don’t see myself as brave or courageous because it has never been a choice, nor have I ever been ready. I don’t feel like you can prepare for a cancer diagnosis and all the idiosyncrasies that come with it. I didn’t put into my planner, “diagnosed with cancer, start being brave at 11 am on 4.24”. I see myself as resilient and doing what I need to do to get through. I am a Taurus, bullheaded and stubborn, and I haven’t given up. I’d rather sign up for more fun things than bravery, like maybe a vacation in Hawaii—it’s much less stressful.

I assimilate the experience of being called brave to someone telling me I am in a battle. I am not in competition with my cancer. Cancer is part of me; why would I battle myself? I have to get to know my cancer, work with it, and determine the best ways to live with it. Chronic cancer is different—there is no cure, and we just hang out together till the end. It is like that roommate you can’t quite get to move out. I also don’t want to be in ‘fight’ mode 24/7; that is exhausting. Nothing irks me more than when someone dies from cancer and I hear, “They lost their battle with cancer.” that sounds like defeat, like they lost and might not have tried hard enough. Maybe that person didn’t want to “fight” anymore; who are we to judge or say? Again, why does it always have to be a battle or a fight? Why can’t it be an eviction? Words can change the entire picture and how someone approaches something. Words like “You have cancer…” can be life-changing.

“Cancer sucks, but you don’t” are some of the best and most iconic words I have heard in my cancer journey. I was having a tough week, crying and upset because I had trouble managing my cancer symptoms. Losing handfuls of your hair during a meeting at work and puking in the work bathroom (there was only one) for hours was just too much. I was beyond frustrated, and at the time, the thought of having to do this for the rest of my life, whatever that meant, was too overwhelming. I felt like a LOSER. I saw all these other cancer patients who seemed to have it under control. They had binders and planners, dressed in t-shirts with matching caps, and I was happy that I got dressed that morning. I now know that they were just having a good day. I came home in tears from work and found a bright blue cake on the counter with the words “Cancer sucks, but you don’t” frosted on top. My younger sister, Katie, had it made for me. She saw my struggle and reminded me I wasn’t a loser. These things were out of control because of cancer. She shifted my perspective for me. I will never forget that cake or those words. I felt seen and validated. I don’t think she’ll truly understand the power of that gesture or those simple few words. It’s a moment I reflect on when I start to feel cancer winning.

My cancer journey continues and will change as time passes. What I need, what I find validating or helpful, could look very different today than two months from now. Each journey is unique to that person, so having conversations and not making assumptions about language is essential. We don’t all look like the super frail, thin, hairless cancer patients you see on TV. Some of us are robust with purple hair and tattoos, which makes things interesting. If you are experiencing cancer or supporting someone who is, try to be yourself, choose your words carefully, know your power, and use it wisely.

“The tongue has no bones but is strong enough to break a heart. So be careful with your words.” -Unknown.